Tag Archives: TFL

Priority Seats

Many things in this world irritate me. At the moment, not just at this moment in time, but in limited life, my biggest irritant is the public perception of my disability and the concessions they do not make for it. Right now*, I know that I am particularly angered by it because I opened the WordPress app to tell you about many things that do not involve how I walked into a hospital waiting area to find no seats free and nobody willing to give up a seat to me.

I am now looking at the many faces in this room having disregarded half of them as poor people whose bodies are riddled with cancer like me and thus are entitled to a seat, imagining the quick deterioration of the days of the rest of them with expensive burst water pipes resulting in days of cold showers, broken favourite dishes, accidentally soiling themselves in front of their colleagues, lost heirlooms and cheating spouses. That is what the healthy visitors deserve for not giving up a seat to a cancer patient with a walking stick. Actually, in my mind, that is the absolute minimum of what they deserve for not giving up their seat.

Perhaps if the room I was in had windows to the outside world, rather than to a white corridor, I would feel more tranquil right now. I would have no desire at all to take people’s legs out with my walking NHS issue walking stick. Of course, if I did give in to that particular impulse, they may then have a genuine need of a seat and that would do me no good at all.

Just an update for you, I am now in a seat. Not because somebody who did not need it gave up their seat, but because I was assertive and stormed towards a seat the minute it became vacated. The next thing I knew, the seat next to me had a new occupant and I had to listen to a gentleman drop several hits about why his wife needed the seat more than me for five minutes. I responded to this by removing my earphones and telling the gentleman and his wife that I too had cancer, and moved my walking stick into plain sight. I then really showed them, by moving to an empty seat when one became available so the gentleman’s healthy wife could sit down next to her husband. Fools.

Fat and young does not make me less worthy of assistance, especially when I accidentally missed last night’s MST dose.

If it is this difficult to get the public to show sympathy or is it empathy, in a cancer centre, how the hell am I expected to survive in public? In the public I see signs for priority seats, but does anybody else? I am not elderly, I do not need a wheelchair and I do not visibly have a part of my body missing. Myeloma can be invisible. Just like, it would seem, as invisible as many people’s manners.

For the first time since my relapse, I found myself on the tube last Saturday Within five minutes, I knew it would be an experience that I would not be repeating for a while. It was an experience where people push and shove and hold onto a seat like it is the their only child. Of the three trains I had to get for a 30 minute journey, none of the stations had stair free access, and only on one of the trains did somebody give up a seat for me. On the first train, I had to contend with somebody who would not move to allow me to disembark, which resulted in my twisting my back and suffering for doing so for the rest of the day. The next day, I got on the 38 bus where somebody had just sat down in one of two free priority seats, before I sat down on the other. The person in question was in her twenties, and audibly tutted as my bum touched the patterned upholstery next to her. She then got up, and moved to another seat behind us with her boyfriend who I did not see behind me. I felt evil. Should I have explained why it was difficult for me to climb up a step to access these seats on a moving vehicle? Should I have to?

I know people manage this type of aggressive travel everyday, but I, to put it simply, cannot do it anymore and I hate everybody who makes it impossible for me to do it. It makes me feel so sick. Sick of this stupid myeloma.

Having an invisible disability is the pits. It is just the pits. Pits. Pits. Pits. I am convinced that a number of people who see me with my walking stick think it is related to my girth and just deserved. I am also convinced that there is a much larger majority, especially in London, who just do not see the stick at all. It all makes stepping outside my front door unpredictable. I have had 26 months to get used to it, but I am still scared by the dangers that lurk behind people not knowing that I have myeloma, let alone the dangers of people not knowing what the dangers of myeloma are (e.g. drunken fool at wedding).

I think I am as strong as I can be. I do not live solely in my flat and I try not to shut myself away, despite home being far safer and more comfortable for me than anywhere else. People, and I do use that term generally, do not see the struggle I face when I leave my flat. I get taxis to make it just that little bit easier, but I am on benefits now, so they have to be limited. Do I give up going out or do I brave the outside?

Travelling and my entitlement to a seat over a healthier person, an entitlement that I am aware some might not agree with, is not the only prejudice I face as a Disabled. I call myself that now. A Disabled; it’s worth it for the cheap cinema tickets. You might have read all of this thinking I just need to be a little bit stronger, a little bit more assertive, have thicker skin and maybe drop a few more Diazapams to chill out before I venture into the outside world. If that is indeed what you do think, I have one more story for you…

Two weeks ago, I found myself walking with my stick at my usual slow pace, alone through Leicester Square. If you are not familiar with said square, it is not the safest place if one needs to avoid crowds and people stopping unexpectedly to take photographs of the M&M store. Anyway, necessity made me go there, and I was managing that, the way I manage most things, by pretending I was not scared of it. As I made my way from one end of the square to another, I walked past a badly dressed, but seemingly popular street performer. As I walked past him, he interrupted his performance to draw attention to me, and said into his microphone, “see that woman, she’s faking, she does not need that walking stick”. The crowd laughed and I felt humiliated. My humiliation resulted in cowardice and I just continued walking pretending that I did not hear what he said, nor the laughter of the crowd. Two days later he and I were there again, but this time, instead of taking the shortcut by him, me and my walking stick took a long detour, to save any more potential embarrassment. I was a chicken.

Since the incident, I have obviously rehearsed what I should have said to the man on that day. I should have explained why I had a walking stick and explain all the reasons why I was not faking. I could have just lifted up my shirt to reveal my radiotherapy scar. Of course, the opportunity has long gone, and boy oh boy does that make me angry or so very angry. On a very personal level I am punishing myself for my cowardice. I fight something very difficult everyday and I could not stand up to a bully who makes his money in an upside down hat.

More broadly, what does it say about people that the man thought it was okay to say what he said and the crowd of people thought it was acceptable to laugh at me? I suppose it says much the same thing as people who sit in a Priority Seat when they do not need to, and the same as people occupying seats in a cancer centre and not giving them up to somebody who has cancer. I just do not quite know what that is.

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Of course it is ‘ruddy hilarious’ when you don’t need a priority seat

I will finish with this thought… The priority of My Myeloma should be my treatment, but more and more with this relapse, I am finding so many other things that cause more unnecessary stress and anxiety. They are things that not unlike treatment are out of my control, but could be remedied if People (that general term again) were more aware of our rights. If People did not want to give their time to consider our rights, then the least they could do is show some manners, or on a more basic level, know right from wrong.

EJB x

P.S. My newfound concerned for the rights of disabled people, is in no way, selfish. Mamma Jones just installed me with manners, that is all. I’m speaking out to all 46 of you for the benefit of others.

* To be clear, the ‘right now’ in question was yesterday… I got a wee bit side tracked with medical information, being impressed with the installation of my cannula, getting a dose of Zometa, getting a train (which highlighted the issues raised in this blog) and going to a seven year old’s swimming lesson.

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Transport for London

My hatred of public transport continues to escalate as my need to use it increases. That pre-rehearsed speech I have had in my head about the general public’s disregard and prejudice towards those with disability, becomes ever closer to an actual thing I am going to spit in a stranger’s face when they do one or more of the things that make it very difficult to live with an almost invisible disability in London.

The obstacles I face when I get on the bus, seem great, and my need to find an alternative means of transport in the form of a taxi is increasing. I say ‘seem’, because I have no idea if I have wound myself up to find issues or whether the selfishness of humankind really is on display every time I venture outside my flat.

I thought travelling would get easier over time, but it is not. It is not getting any easier. The act of using any mass form of TFL supported transported does not empower me not does it offer me independence. Travelling may get me from A to B, and then to C, but in order for me to do that on a bus or tube, I am slapped around the face by my limitations and illness, and my is that a rotten feeling to have every time I use an Oyster Card.

A few weeks ago after my treatment, I found myself using my Oyster Card on Tottenham Court Road and I think it would be a fair assessment to say that I was not happy with the situation I found myself in. By situation, I mean having to get the 73 bus northbound. Experience tells me that this particularly bus is populated by selfish bunts. I used to use said bus regularly.

Anyway, where was I? Yes, I was on the bus, and over the course of my journey, I drafted and submitted the following, which sums up my thoughts about TFL quite nicely;

“Vehicle reg: LJ11 EFK

I got the 73 bus from the Warren Street stop towards Stoke Newington.

I have concerns about the provision for disabled passengers more generally on London buses. Having previous fractured a vertebrae when a bus broke, I am understandably cautious when I am on a bus, and this includes a bus driving before I have had a chance to reach my seat. I walk with a walking aid. The issues are made more difficult by passengers not understanding the priority seats.

Today, however, my usual concerns were exasperated by a particularly rude bus driver. As I sat in the priority seat nearest the driver, my walking stick fell to the floor. Not a big deal I know, but it apparently warranted the bus driver shouting at me twice, on a full bus, to look after my stick and agressively shout ‘secure your stick’. Now, I have just had chemo at UCLH and I have a bag of drugs in one hand and my handbag in the other, so ‘securing’ my stick is somewhat difficult when I have nowhere to put it. It is something I find difficult when my hands are free. This is not the way to speak to disabled people. The driver has no idea why I have to walk with a stick and he should be respectful of that. There is much stigma attached to being disabled, and being shouted at by a bus driver because of my disability was humiliating and unwarranted.

A falling stick may make noise, but before he opened his mouth to voice his annoyance he should have considered my annoyance at having to walk with one and everything else that encompasses. It is ignorance.

Further more, at Kings Cross, there was another passenger with a Zimmer frame, whom the driver refused to let enter at the back of the bus (she did not seem capable of walking a far distance) and thus she chose not to get on the bus because she could not navigate the bends at the entrance.

It was an infuriating journey.

As I mentioned before, TFL’s approach to disabled passengers is far from perfect (I would suggest more priority seats for a start), and this bus driver just provided further evidence to support my view that the appropriate concessions are not made for disabled passengers. I do not think it is much to expect a few concessions and understanding from TFL employers/contracted staff, when one is attempting to remain as independent as possible and unfortunately, this was not afforded to me today.

Regards,
Emma Jones”

Nothing I do, will inspire a cultural shift in the commuter population; it will always be insular and self serving. I doubt, whether my complaints will make the driver think twice before he is rude to somebody again. Externally, the impact of me complaining was minimal. Internally, it made me feel a hell of a lot better. Especially when I received the apology. I have found a new pastime.

“1 April 2014

Ref: 4311555

Dear Ms Jones,

Thank you for your recent e mail regarding the driver of the route 73 bus you travelled on from Warren Street on 20th March.

I was concerned to learn of your experience. We expect our staff to be courteous and sympathetic towards our disabled customers and behaviour such as you described is unacceptable.

I can confirm that from the details you gave, we have been able to identify the driver in question who has since been interviewed by his manager where he was advised on all aspects of your complaint and reminded of his responsibilities. He will also be closely monitored to make sure that there are no further incidents of this nature.

Thank you once again for taking the trouble to bring this matter to our attention and I hope that you will accept my apologies for the inappropriate behaviour by a member of our staff.

Yours sincerely

Mrs X
Customer Services Manager
Arriva”

Small victories. They make me feel less weak.

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Planes, Trains and Automobiles

Sometime ago, I got the number 30 bus from Hackney Town Hall to the stop nearest to my flat, and as I stepped onto the curb on the road they call Ball, I remember how elated I felt, because finally, after months of Mamma Jones driving me places, taxis and the Patient Transport Service, I had regained some of the independence I lost with myeloma. Many months have passed, over a year’s worth in fact, since that happy time, and I can now without any hesitation that I no longer feel that way when indecently travel. The novelty has well and truly warn off. The adrenaline I felt that day has long been superseded by apprehension. Apprehensive and loathing to be precise.

Now, with the PTS a distant memory, any travel I undertake no longer feels a matter of routine as it should. Travel is an effort. It is an effort for a number of reasons, not least because I have become a lazy bum who loathes strangers, particularly the sort of stranger who does not know what a ‘Priority Seat’ means. It is a bummer, especially now I am getting out and about and attempting to enjoy #londonlife.

I fear the unknown with travel. I fear what will happen if I get tired whilst I am doing it, I fear people bashing me and not letting me sit down, I fear that I cannot always be independent when I am doing it, I fear that my face will not be able to disguise how uncomfortable some seats are for me, I fear falling over and I fear what will happen if my mode of public transport breaking down. These fears go through my head every time I travel and thus it is the reason why my current, preferred and used mode of transport is a black cab. Trust me, taxis are an expensive way to travel, but it saves my precious energy from worrying about being forced into delivering my much mentally rehearsed, vitriolic speech to people who fail to surrender the priority seat when it is needed. The speech by the way is awesome, designed to make the recipient go home and flush their head down their toilet with their mouth open. Sometimes, I admit, it can go too far and include a certain word that is not ladylike and I am working on that. Ignorant norfolkers.

I have had the time to dwell over my ability to travel and I have come up with certain rules to reduce my fear and manage my hatred of humankind and they are as follows:

🚌 Do not travel during rush hour
🚌 Do not leave the flat without my stick
🚌 Do not get on a bus with any form of luggage
🚌 Never go to the top deck of a bus, because you cannot, and on the rare occasions you have done it, you have paid for it instantly and then well into the following day
🚌 Never stand when a vehicle is in motion
🚌 Prior to travel, if concentration is proving impossible and the bagS below the eye have turned a deeper shade of purple, throw money at the problem
🚌 Avoid the aisle seat, as turning corners can really be treacherous when you are sitting next to somebody equally as large as you are
🚌 Always be polite to those under the employment of the travel company, always, and if this includes saying ‘hello’ and ‘thank you’ to the bus driver then so be it, it could lead to a free upgrade
🚌 If disaster strikes, ring somebody and talk incredibly loudly about the fact you have myeloma which is a cancer with no cure

Some of these rules are easier to follow than others, and it is on the bus where I find myself becoming a rebel. Not a rebel as such, because in no way, is it enjoyable.

In my mind, buses are the most dangerous and troublesome form of transport and nothing TFL can tell me will convince me otherwise. Buses are dangerous for many reasons, they were dangerous before I knew they were dangerous. If I knew what I know now, in early August 2012, I would never have stood up on a bus as it was breaking and thus I would not have ended up clutching a lamppost on Shaftesbury Avenue crying and too shy to ask the policeman walking past me to call an ambulance. Now, being the know it all I have become, I resist the temptation to stand up whilst a bus is in motion as noted above. Bus drivers, unfortunately, are not privy to my rules, and they frequently drive their big red vehicles before I am safely in my seat. I find this most inconsiderate. At least I have now worked up the courage to tell the person next to me that I will not stand up to let them out until the bus has come to a complete stop; it is always met with confusion. I do not get on with luggage at all because I am not agile and any lifting has to be saved for the train, in the event that I can find nobody to assist me or if the train is busy. That is also a consideration I have and one I faces and flailed today.

My main issue however is with the public. On the buses (and they could be getting a bad reputation because I use them the most), on the train and on the tube… My impression, which of course is skewed, is that people ignore those with a disability, unless you have a visibility disability or a blue rinse. I was once asked to get out of my non-priority seat by a man in front of me in a priority seat to allow an older lady sans stick to sit. I said no. On another occasion, I walked into a bus outside UCLH with a bald head and a large bag saying pharmacy, and asked for a seat and nobody got up. I asked again and nobody got up. More generally I am encountered by competing eyes looking at other like minded seated people, wishing that they win in the competition of whose manners kick in last. It is a headache and one that I fret over again and again. Two years ago, I wager I was one of them. Actually, I was not because I was a top deck sort of gal.

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Sod that, give me a badge

I said once that my life is full of new challenges now, and this my friends is one of the greatest practical ones I have facing me, and it is one that I should face everyday but sometimes, the worry and effort get the the better of me. Home is safe. Taxis are comfortable.

There is one mode of transport of which I would not complain about (apart from pain from sitting and sitting leg room) and for that, I wait with breath that is baited. Seriously though, can somebody please just put me on a plane.

✈️

EJB x

P.S. Some may call this attention seeking. I call it preservation.

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Englishness

Today I found myself on the tube or to go by its official name, the London Underground. I have never been a fan of the tube, it’s the sweat aspect of it really, people’s sweat in my face and my sweat on my pits. Anyway, I was on the tube because I was running late and even though I do not like it, and there are more changes, which does me no good at all, it is faster than the bus. Practical.

So there I was on the Victoria Line, with my walking stick. I walked through the sliding doors into the carriage, rattling my stick, to find all the seats taken. People looked up and me, but nobody was budging. Bastards. This threw me into a dilemma. The only reason I travel with the bloody stick is to avoid situations where I have to ask somebody for a seat. In terms of my manners with strangers, at times when I do not have steroids pumping through my veins, I am the most English of English people. I say sorry to people when they bash into me, I like to queue if there are seats, and as it turns out, I do not ask people if I can have a seat on the tube because I do not want to appear rude.

Ordinarily, I think I could have managed the 15 minute journey standing, but somebody on my train was taken ill, which added a further 20 minutes to the journey. People tutted. I rattled my walking stick some more and sighed. People did nothing. Instead, I had a couple who both needed to wash their hair, shove their instruments in my face.

I then had a hot flush, one really needs to sit during one of those bad boys, if only so there is something else there to absorb the sweat from my butt. And still, my fellow commuters, travelling outside of rush hour, were oblivious to my plight. Perhaps they were all afflicted with an invisible disability like me and were brave enough to face the world without a visible symbol of weakness, but the odds of that are pretty slim, like getting myeloma. I will take a gamble however and say that the majority did not have an invisible disability. The longer I stood, the more I could feel my back, invisibly poking me. Perhaps I need a badge, like the ‘Baby on Board’ badges that says, ‘Cancer. Weak Bones. Take Pity’. I did contemplate theatrically removing my hat, because I thought that my head plus walking stick would definitely result in somebody giving me there seat, but I vetoed that, because it would have meant that I had to carry my hat as well as my coat, stick and handbag. The longer I stood, the more I believed that everybody in my carriage was evil, and I mean urinate on puppies and kittens type of evil. By Oxford Circus, I was convinced that there were so evil, that they might actually defecate on those puppies and kittens too. Bastards.

All of that venom and anguish because I was too polite to ask for a seat. I say polite, you may say something else.

I’ll have to learn…

My name is Emma Jane Jones and I have a disability.

Fortunately my faith in humankind was almost restored on the District Line when a Mr Darcy-esque male with manners, offered me his seat without prompting when I changed tubes. I felt a bit sorry for him, not because he was wearing a pointy loafer, but because I was only on that train for a stop. But my, did that seat feel good. I sighed with pleasure. Trust me, that’s not a pleasant sound for anybody. I then felt sorry for everybody on the carriage. Well, the people not listening to their iPods.

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The Outside

I have always been one for enjoying the world outside my home. Flip the coin and I have also been one who has enjoyed wasting a day in my home. I think of all the times I indulged in the latter now, and I never imagined that it would become my existence. When I am at home now, if I am not in an uncontrollable sleep, I think about being somewhere, anywhere else. Part of me longs for it. I long for my old body and my old life, outside of N1 or Deeping. The reality is quite different. With my new body and my new life, I can find the outside world terrifying.

The flat is safe. I know how many footsteps there are from my bedroom to the toilet and back again. I can navigate most the hurdles that could possibly come my way in the dark, without a walking stick and more often than not, I can control who comes through the front door. The outside world on the other hand is a vast pit of unpredictability and danger. The general public equals danger.

I can count on one hand the amount of times I have left my flat for something that is not a pint of milk, by myself, since I was diagnosed nearly three months ago. I do not include hospital visits in this, because those sort of trips are controlled, basically escorted and all so very predictable.

Leaving the flat by myself feels naughty, almost forbidden and I am not sure if I like it. I want my independence, but I want that to come without the anxiety of falling over or being pushed in a crowd. People frighten me. They live in their own worlds and their worlds do not include My Myeloma. I do not want to walk around with a big sign around my neck that says “with cancer and brittle bones”, but sometimes I think it would be a good risk management tool. Just in case.

There are a lot of days now, when I do not need my walking stick. Hooray for pain control. That said, I would not dream of leaving the flat without it; it acts as my protector when there is nobody around to be my protector and even then, it doesn’t always work. People push, barge and shove. People do not consider what the stick is for and thus they are a threat. A threat to my bones and a threat to my long term mobility. Today, I caught two buses and on the return journey there were no priority seats available and nobody made one available. I am not sure if I would have done this in my former incarnation either. At the weekend, I ventured into a shop without my stick but accompanied by a five year old and a lady rather politely asked me to move or she would hit me with her buggy because I was blocking the aisle. I would not have said this in my former incarnation, but I may have judged the large woman standing in my way struggling to stand. Maybe this is karma.

I want to be outside. I want to do normal activities and not feel My Myeloma. Physically, this is impossible and until I address my current fear, psychologically, it is, erm… tricky.

My name is Emma Jane Jones and I have become a scaredy cat.

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The Number 30 Bus

Okay. It was an accident. I was out, in public, socialising. I needed to get home. There were no available taxis on Mare Street, London, England. There was however a bus, the number 30 bus. So, I bit the bullet and got on the bus for all of eight minutes. I sat on a Priority Seat. I then walked from Balls Pond Road, London, England to my Flat, London, England, Earth, The Universe.

It was accident. I know I have a cold and I do not want to catch anything else. I also know that buses are not the places for people with wobbly spines, but, I just got the frickin’ bus. The last time I got a London bus, or any bus in fact, was on the 12 August. I was in so much pain during that particular journey, I cried. I didn’t cry today. I am not going to make a habit of it. People are dirty. Before you take offence, I am also dirty for I am a person. But, I got the bus. The number 30 bus. I prefer other bus routes, but beggars and all that.

I do apologise to all those people, well, the three of you, who told me not to get the bus today. I promise, it was a Β£2.30 accident. Really.

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